Book advises patients how to 'win' against Parkinson's

In this April 18, 2011 file photo, Dr. Michael Okun talks with former U.S. Attorney General Janet Reno during the grand opening of the University of Florida Center for Movement Disorders and Neurorestoration. He is the author of "Parkinson's Treatment: Ten Secrets to a Happier Life."

Published: Monday, April 1, 2013 at 5:48 p.m.

Last Modified: Monday, April 1, 2013 at 5:48 p.m.

The body has its own shared, universal language — and what it communicates during Parkinson's disease and how to best cope with those messages is the subject of a new book by a University of Florida physician that is traveling the world.

The book, “Parkinson's Treatment: Ten Secrets to a Happier Life,” by Dr. Michael Okun, co-director of the Center for Movement Disorders, is being translated into more than 20 languages — by many of Okun's own colleagues and students.

The “backyard garage” project, as Okun calls it, is also the culmination of his bedside experience in treating Parkinson's disease patients from around the world — a role Okun likens to “cabinet-level minister” reporting to the patient.

“I feel very strongly that a doctor should not be paternalistic,” he said. “When you develop a bond with patients, and they realize you're there to share knowledge, the vast majority of patients are going to come with you.”

Carol J. Walton, the CEO of a nonprofit called the Parkinson Alliance, said the book “gets down smack in the middle of patients. It makes a big difference.”

Okun's book reflects his hands-on approach. Taking note of the fact that doctors “don't go home with patients,” he writes about 10 secrets to having a better life after a Parkinson's disease diagnosis, which Okun said is important to distinguish from other neurodegenerative disorders such as ALS, Alzheimer's, or even brain tumors, which patients often confuse with Parkinson's.

Indeed, “know the signs” of Parkinson's disease is one of the 10 secrets. Another secret is “be aggressive in treating depression and anxiety,” especially since it's estimated that more than half of Parkinson's disease patients will suffer from depression.

Others include treating sleep disorders — which are also common in patients — exercising to improve brain function and asking about new therapies.

“In a sense, this book is as much about medicine as philosophy: how to win with Parkinson's disease,” Okun said.

The book also shifts the attention from finding a cure for the disease to living well with it, which he said is entirely possible.

Because the disease for the most part doesn't affect cognitive function, 95 percent of those afflicted, Okun said, “maintain very intact, meaningful relationships.”

“Getting diagnosed with Parkinson's disease is not the end of the world,” he said.

And getting his message out to the world is one of the underlying aims of the project, especially since Parkinson's disease is on the rise in countries in Africa and Asia where access to treatments and general awareness of the disease have been limited.

Calling on colleagues and former students, Okun has had the book translated into more than 20 languages, and he said he decided to self-publish precisely because he was intent on having as many translations as possible.

“It's been a lesson for me in how diverse the world is,” Okun said, adding that one of the challenges in the translations is that certain terms, such as deep brain stimulation, don't translate in character-based languages such as Hindi.

In Swedish, that wasn't a problem for Beata Ferencz, a doctoral student at the Aging Research Institute at Karolinska University who did her master's thesis on apathy in Parkinson's disease at UF. Ferencz explained that in the Swedish edition, the translators use English for technical terms such as “deep-brain stimulation.”

“I think we can really reach people in Sweden,” Ferencz said.

She added that the book is helpful not only for patients but for their caregivers.

“It gives patients and the people around them hope that you can live a long, healthy, successful life (with Parkinson's),” Ferencz said. Adding that this sense of hope is “very American,” Ferencz said, “I think that will carry to countries here in Europe.”

<p>The body has its own shared, universal language — and what it communicates during Parkinson's disease and how to best cope with those messages is the subject of a new book by a University of Florida physician that is traveling the world.</p><p>The book, “Parkinson's Treatment: Ten Secrets to a Happier Life,” by Dr. Michael Okun, co-director of the Center for Movement Disorders, is being translated into more than 20 languages — by many of Okun's own colleagues and students.</p><p>The “backyard garage” project, as Okun calls it, is also the culmination of his bedside experience in treating Parkinson's disease patients from around the world — a role Okun likens to “cabinet-level minister” reporting to the patient.</p><p>“I feel very strongly that a doctor should not be paternalistic,” he said. “When you develop a bond with patients, and they realize you're there to share knowledge, the vast majority of patients are going to come with you.”</p><p>Carol J. Walton, the CEO of a nonprofit called the Parkinson Alliance, said the book “gets down smack in the middle of patients. It makes a big difference.”</p><p>Okun's book reflects his hands-on approach. Taking note of the fact that doctors “don't go home with patients,” he writes about 10 secrets to having a better life after a Parkinson's disease diagnosis, which Okun said is important to distinguish from other neurodegenerative disorders such as ALS, Alzheimer's, or even brain tumors, which patients often confuse with Parkinson's.</p><p>Indeed, “know the signs” of Parkinson's disease is one of the 10 secrets. Another secret is “be aggressive in treating depression and anxiety,” especially since it's estimated that more than half of Parkinson's disease patients will suffer from depression.</p><p>Others include treating sleep disorders — which are also common in patients — exercising to improve brain function and asking about new therapies.</p><p>“In a sense, this book is as much about medicine as philosophy: how to win with Parkinson's disease,” Okun said.</p><p>The book also shifts the attention from finding a cure for the disease to living well with it, which he said is entirely possible.</p><p>Because the disease for the most part doesn't affect cognitive function, 95 percent of those afflicted, Okun said, “maintain very intact, meaningful relationships.”</p><p>“Getting diagnosed with Parkinson's disease is not the end of the world,” he said.</p><p>And getting his message out to the world is one of the underlying aims of the project, especially since Parkinson's disease is on the rise in countries in Africa and Asia where access to treatments and general awareness of the disease have been limited.</p><p>Calling on colleagues and former students, Okun has had the book translated into more than 20 languages, and he said he decided to self-publish precisely because he was intent on having as many translations as possible.</p><p>“It's been a lesson for me in how diverse the world is,” Okun said, adding that one of the challenges in the translations is that certain terms, such as deep brain stimulation, don't translate in character-based languages such as Hindi.</p><p>In Swedish, that wasn't a problem for Beata Ferencz, a doctoral student at the Aging Research Institute at Karolinska University who did her master's thesis on apathy in Parkinson's disease at UF. Ferencz explained that in the Swedish edition, the translators use English for technical terms such as “deep-brain stimulation.”</p><p>“I think we can really reach people in Sweden,” Ferencz said.</p><p>She added that the book is helpful not only for patients but for their caregivers.</p><p>“It gives patients and the people around them hope that you can live a long, healthy, successful life (with Parkinson's),” Ferencz said. Adding that this sense of hope is “very American,” Ferencz said, “I think that will carry to countries here in Europe.”</p><p>The book is available on Amazon and at www.smashwords.com.</p><p><i>Contact Kristine Crane at 338-3119, or kristine.crane@gvillesun.com.</i></p>